United Kingdom: ME Association news

Yes, agree! Have edited.

 

Ah, so it goes on to reveal the mind-blowing lack of insight behind the editorial in more detail.
Riley seems to think he is somehow a provider of benevolence. The actual benevolence comes from members pockets and recently has been squandered (at least on one project). The whole tone comes across as distasteful to someone looking on from outside.

 

I think this is new?

 

Woefully inadequate statement. Doesn't tackle the fact that he openly mocked those he knew he would be offending with his 'opinion' - and what was probably most incendiary in what he wrote - reaching for their keyboards or some such wording.

He's the chair of the bl**dy charity, not some junior staff member who wrote something a bit off, or a patient with ME who wrote an opinion piece. He wrote a piece that he acknowledged from the outset would probably p*ss people off and funnily enough it did and he can shrug it off with some pithy justification.

 

Disgraceful that they have turned off comments to this post on Facebook.
They have also turned off comments on the Twitter/X post, as well.

 

nope, you don't get to sneer about people being oversensitive if they disagree with you and then turn round and preach that "we must all come together".

 

If I had a pound for every “opinion” I have to close my ears to, I’d be a millionaire. As David Bowie said “I am whatever the greatest number of people believe me to be”. It was “just an opinion piece” means something to press regulators, but not to pwME having this nonsense pushed down their throats every day in real life, and now also in the magazine of the charity who represents them (allegedly).

 

BPS do, look at Alistair Miller’s article.This is the same behaviour - invalidating to us, and straight out of the abuser’s playbook


“If my phrasing gave the wrong impression, then I wholeheartedly apologise”.

that’s not an apology, come on

 

https://twitter.com/user/status/1858910120442311150


Long Covid Advocacy @LongCovidAdvoc

Long Covid Advocacy's response to The ME Association in solidarity with #ThereForME
4:28 PM · Nov 19, 2024

 

How do these people get into powerful positions in patient charties?

 

Other people like this around them.

 

So, a typical non-apology apology. Comments are disabled because of course they are.

They don't seem to understand that there is deep and widespread discontent with how pwME are represented by the charities & organisations that are meant to be working on all our behalf. To me they seem distant, remote, and often have an unnervingly poor understanding of our condition. They are stuck in outmoded, decades-old styles of working and thinking. They fail to adequately challenge the NHS and its network of useless-to-actively-harmful clinics. They lack an understanding of the scope and scale of reform and change that is required. They all too often seem to regard patients as a problem to be managed. Some have embraced nonsense. Some are funding nonsense. They are all far too opaque.

They should accept that the history has resulted in a great deal of patient mistrust, and commit to a high level of transparency and accountability. They should never walk away from or close down debate.

I can only imagine what it would be like to be a new patient, to open up a magazine from an organisation that is meant to be representing you and acting on your behalf, only to be lectured and hectored in this supercilious and condescending way.

We endure enough slings and arrows from various members of the medical profession and the general public; the organisations that represent & advocate for us should be accepting, tolerant, generous, open, thoughtful and understanding.

 

I’m laying here rather baffled.

They/he cannot seriously have thought that was going to be good enough to put an end to it?

Anyone reading the response would surely have seen it was just going to pour more fuel on the fire?

They have clearly not taken any external crisis management advice, or, if they have, I’d not be paying the bill.

Then again, the article got published in the first place so this I guess just confirms an organisational lack of judgement.

Or, perhaps they have taken the view, let him keep digging..

 

Absolutely. I’m no comms/PR expert, but this is like something from over 30 years ago! Way to pour oil on a fire.

And the bigger issue is that now it appears the organisation is complicit. He may have just near demolished the MEA.

Compare and contrast Sonya Choudhry’s recent apology.

Neither charity should be making these missteps in 2024.

 

My alternative theory; they all hate him and have allowed him the platform to get this response to get rid of him. That would make more sense than the rest of what has happened.

 

I can believe this. They’ve had enough of containing it, let him loose.

 

Agreed, this could be existential, an E.L.E. (you may need to have seen Deep Impact for that to make sense)

 

The fact they appear to think it's adequate is even more worrying than the original statement.

They don't seem able to see that their messaging is on the level of well-off politicians who think poor people need to be taught budgeting.

 

That's a worry.